Over the last three years, we have participated and even donated items or supplies to other organizations that work with the same type of families, and in many cases, the exact same families we work with. It is always a blessing to be able to share my time, talents and energy to support the families we serve throughout a variety of way.

One of these organizations is Beads of Courage, which we have wrote about quite a few times here, but we have added something new this year in working with families who also participate in this and other similar arts in medicine programs offered by different organizations.

We had a butterfly bead created, that represents our organization and can be added to any existing bead strands a child already has through the program they participate in. These beads are for children that have requested and/or received a gown from Gracie's Gowns. Children who have passed away, but a gown was requested and/or received prior to their passing also qualify for this program.

The program is at NO COST to our families, whatsoever, however, anyone that is able to help towards the bead cost and shipping expenses is always welcome to do so. We have had other families and even private donors help support this program as well with the first set of fifty beads that arrived in July.

Each bead is handmade, they are glass lampwork beads and are made by order. The colors in the photo above are the colors available: pink, blue, purple, green, and a multi-color one as well. They are absolutely GORGEOUS in person, I cannot take a single picture that does them justice.

The other item we have offered with this program, is how we got started helping these types of arts in medicine programs - a bead bag. Some families that participate in their respected programs are not provided with a bag in which to hold their strands and beads in. Many of times because the hospital is in short supply of them, or they just don't use something like that. So we have also asked whether or not a bag for the child's beads is needed. They are very simple drawstring bags, but they are so much better than using a ziploc sandwich bag or something along those lines.

We have some labels from Beads of Courage that we put on the bags for those that participate in their program, but need a bag to keep their bead strands in. For those that participate in other programs, we just put our gown label on the bag.

Our beads are not directly associated through any of the programs listed on the request form, meaning that you cannot get our bead through their program, it has to be requested through Gracie's Gowns using our request form. We order the beads when we have at least fifty requests, it is more beneficial shipping wise to us when they are ordered in larger quantitiesThe link to our form is located through this link: https://docs.google.com/a/graciesgowns.org/forms/d/1Ctc8c1rLVaXCWKpMy1C-EK85rJqi5vAex15JOxRxToY/viewformWe look forward to adding your little one to our Butterfly Bead Club!

So in June and early July we collected orders for TPN/Tube Feed Backpacks, which isn't something entirely brand new for Gracie's Gowns, but this particular style of backpack is. Not only that, but how they are modified is different as well in comparison to the previous years.

While I had a few moments and am still working on getting all ninety-five, yes you read that correctly, ninety-five backpacks completed from the order. I wanted to show some better pictures of what they look like before and then the modifications we're making to them. Now, I do want to throw out there, any new orders will have a price increase compared to before, since this was our first time using these, first time ever ordering wholesale and so many other new adventures, Gracie's Gowns has absorbed all of the additional costs that were not charged to those who ordered, meaning, for lack of a better phrase, we lost money rather than breaking even, which was the plan. We never intended to make a profit, to break even was the goal, so with the price increase, this should happen on all additional orders placed (more information at the end on ordering).

In the set of photos below, are the more detailed pictures of what the backpacks look like when they come in from the manufacturer. We decided to use the Sugarbooger Kiddie Play Packs from Ore Originals for our backpacks this year because of their size, the prints available, and the ability to embroider them a whole lot easier than before. The specifications on the backpacks are as follows:

They are 8" x 4" x 11" in size

Waterproof cotton canvas exterior and durable nylon canvas interior

Nylon Straps

Lead-Free and BPA-Free

Non-toxic

Machine Wash, Air Dry.

If you clicked on the link in the text above, I promise, we didn't pay $26 a piece for them, we were able to order them at wholesale for around half that cost, but there were restrictions to it. First our order had to be at least $150.00 in total, but what really made the concern was having to order in sets of three for each print. This left us picking up several extras in the various prints in order to make that minimum requirement...the extras are listed below with the ordering information too. This will be a standard as well for all additional orders we place, at it is their wholesale requirement.

Now here is how they are modified by us (well me) in between working on gown requests and getting our butterfly beads and bead pouches out in the mail...and everything else going on in life behind the scenes of Gracie's Gowns.

First off, I install a 1" grommet through the back side of the backpack, I have been placing them on the right hand side of the backpack (as if you had it laying on a table, back side up, looking down at it). We cut the hole for the grommet to go through and then snap the two pieces together. Really...this is the hardest part and requires a bit more strength than I imagined it would. They are plastic grommets, in case anyone needs to know the material they are made from.

Next step is the chest strap, all of the modified backpacks automatically come with a chest strap. If you requested one without modifications, I did not include the chest strap, should you need one though, please let me know and we can get them to you. This step is really the easiest, originally the plan was to make them, but with the time constraints in place, myself being the person modifying all of them, and needing to get these backpacks into their new homes, I was able to find some already made. This is where some of the additional cost came in to play. These chest straps came from Timbuk2 and are adjustable. I had contacted their customer service department about donating some or allowing us to order via wholesale, but was not able to get a response in time based on when the backpacks were to ship. So we ordered them outright, the cost was $5.00/each not including the shipping costs, which on 105 of them (I ordered for the extras as well), was almost $60.00, but they are durable and can even be washed as well. The other area we had a larger than expected cost has been in the shipping expenses, especially those who have multiple backpacks coming to their homes.

After those two things are in place - then onto the personalizing. I think I've finally found the best system to keep them in place since they are a little too thick to hoop with my embroidery machines' hoops. We have spray adhesive, heavier stitch n' tear stabilizer and then removing the name card from the inside front flap is what happens before it is ready to go. The front flap is then placed on top of the stabilizer and I program the name into the embroidery machine.

Which looks something like this, and yes, that is only half the stack of the gowns that need names embroidered on them in the background, no worries, that is on my plans for after occupational therapy for my son today. This isn't the last step, but, they are on their way to being entirely modified and ready to ship once the names are embroidered. While the machine does all the work, this has really been the most difficult part of the backpacks because the color options I was given do not seem to always show up the best against the designs. I am working on getting the best colors chosen, but it really has been trial and error for some, as I cannot tell until after they're embroidered.

The very last step is adding the loop on the inside of the backpacks, this is so those who want to hang their TPN/Tube Feed inside may do so. It is comprised of white webbing, with heat sealed edges to help protect against fraying and then a kamsnap that is placed on the folded edge, but also through the back of the backpack on the inside of the back panel. Once this is done, the back packs are ready to be shipped out. Now onto the part everyone is waiting for, how to order and what extras we have on hand already.

The above are the designs the backpacks are currently available in, orders placed in September will have the option of a couple additional styles, but as for right now and the ones we have extras of, these are the prints available. Out of the prints above, we have the following amount of extras.

Princess - 1

Birds and Butterflies - 1

Happy Camper - 1

Matryoshka Doll - 1

Retro Robot - 1

Hedgehog - 2

Cupcake - 2

Skulls - 2

Ocean - 1

Lady Bug - 1

It's a Jungle - 1

Polar Pals - 1

For those that are interested in ordering one of the above, this link (and you can click on the picture above too for the link) will open the order form, from there you will be sent a PayPal invoice. Once the invoice is paid, your order will be added into the mix of ones to be worked on. Anyone who missed out on this order, can place an order as well, once we reach the minimum required wholesale amounts (in gross total and in design sets) we can place another order. I will look at doing so late October more than likely, make sure to follow our Facebook page for the information on it. The new cost will be in effect for anyone ordering one of our extras in additional to all new orders as well, which is the pricing seen on the order form now.

While I was completely thrilled to offer them at the lower price in the beginning and helping ease the financial burden of making each child's medical journey nicer, we had to increase them so our sponsorship and shipping funds are not compromised. I pray everyone can understand the increase and I believe it is still considerably lower than other folks who make, modify or sell them, I know it is not as low as many would like.

As my usual, I will continue to update when more have been completed and mailed out. Patience, grace and understanding are always appreciated, as I am but one woman trying to save the world one stitch at a time.

The last few weeks I have been awake and taking care of essentially everything 15-20 hours out of each day. This is not a complaint, to be honest, I've been amazed that I can function like this given everything behind the scenes, however, it is in these late hours that I do start to feel stress in relation to getting the important aspects of Gracie's Gowns taken care of.

This is my job, this is my dream, this is the legacy that I will leave behind when my time is over on this earth, and I will continue to put forth every ounce of energy to make the bigger plans I have in store for Gracie's Gowns come true. However, despite all my valiant efforts to save the world one stitch at a time, it can be and sometimes is exhausting, overwhelming, and even in some aspects it can be frightening.

Those are the moments I look for inspiration to just keep swimming and to bring myself back to where it all began. Sounds simple, but even that can prove challenging. That being said, over the last month or so I have a constant reminder that has helped me to remember just how amazing this organization is and will continue to be, my roots in creating it, the reasons behind every stitch, and how far the organization has come since conception a little over three years ago.

A little over a year ago I had a box of 4" x 4" fabric squares that had been cut from remnant pieces of gowns and from what I can remember now some of my personal projects as well, just taking up space, so to speak. It was always my intention to make them into scrap quilts and raffle or auction them off in order to help raise shipping funds and such.

I had posted to Facebook about this box of scrap pieces and Rosie was so excited to take them off my hands and make them into "something special." Little did I know that this something special would end up being for me.

When she first brought this scrap quilt over and I opened it up, I couldn't help but start crying. It is sentimental on so many levels. There are pieces from gowns from day one of me sewing them, gowns of children that have passed away, and so many pieces of gowns that I can pick out the name of who it was for, because I am just that kind of person that every child deserves a gown just as unique as they are.

And then there are the random, I just thought they were pretty fabrics that I used to make items to sell at Graves Mountain over the last three years to raise money for Gracie's Gowns (like the macaroons one above). I originally had posted to our page that the quilt was going to be for raffle or auction, but the more I looked at it, the more I thought about it, the more I held it...I just couldn't let it go and in that moment, Rosie messaged me saying that the quilt was for me/Gracie's Gowns to keep as a reminder and keepsake of these children we make gowns for.

It is in my plans to have an office in the near-ish future, while I always say the sooner the better, we have some decisions to make and the office may have to be postponed just a wee bit, but I do know that when I have an office, there will be a reading corner for families and children to use while they are there. This will be going in that reading corner, so anyone who needs a hug, can snuggle up with it and feel connected and hugged by all the children who have gowns represented by this quilt. Right now, it sits on the back of my sewing chair...the best place for it to be, to continuously remind and inspire every stitch...and to keep me warm when this bedroom becomes way too cold.

Thank you Rosie for blessing me with such a sweet keepsake...and thank you to all our families for blessing me with being a part of your child's medical journey, to inspire me to be a better person and to fight for not only what matters most, but what I believe in as well.

This year we've worked on some more Beads of Courage bead bags and we were looking forward to donating them to the table at CureFest last weekend, but they were not in attendance this year. So instead we are mailing them back to the main office of Beads of Courage and cannot wait for them to be distributed to children participating in the program across the United States and the world.

Each bag we make is from left over pieces of fabric from our gowns. Even though they won't make it to the same kiddos we have made gowns for (or by sheer luck some might) it is still a special honor to use the fabric we've received through donations or purchased with donations to benefit another great organization.

This is a great project for Fat Quarters and pieces of fabric similar in size. The labels are supplied by Beads of Courage as well and they really do make the bags look so spiffy! Their labels is what actually made me want to get labels made for our gowns, they just have a more professional feel to them with a label.

Each bag is lined with a fabric of your choice and the seam once turned is sewed together on the bottom of the lining fabric, so no one really sees it (but still keep it pretty). I like using coordinating fabrics, plus it helps dwindle down the "stash" of fabrics I have here taking up space...so I can buy more...just kidding (maybe only halfway kidding). You can also use the same fabric you did for the outside of the bag as well.

Here is what I use for the drawstrings - it isn't cording and for the life of me, I can't remember what it is actually called. Once I purchase more, I will make sure to look at the name of it and post it as a comment to this blog posting. Normally I get it from Joanns with a coupon, it doesn't cost very much then, but you need 26" per bag, so I try to buy whatever they have. The last few times I have been in our local store, they haven't had any though.

Below are the close-ups of the fabrics we used for this batch of Beads of Courage bead bags. Do you see the fabric we used for your child's gown? If so, which one?

These will go out in tomorrow's mail and should arrive before the end of the week - once again it has been a pleasure working on these bead bags and we can't wait to finish up another batch!

Our second NICU we chose to receive a box of NICU Smocks was Johns Hopkins Children's Center NICU located in Baltimore, Maryland. They have a state of the art NICU that was built in 2012 and it includes 45 private NICU beds. They services neonates with all sorts of complex congenital birth defects and disorders in addition to the little ones just born too soon. The thing I love the most about their new NICU is that each room has the ability for a parent to stay in the hospital with their baby, something most NICUs don't have, well many intensive care units don't have that, even the ones for adults. You can learn more about the NICU and what they offer through their website at:http://www.hopkinschildrens.org/neonatology/

Johns Hopkins Children Center's NICU was nominated by Adrianne in honor of her son Xavier who was cared for by the wonderful doctors and nurses in the NICU. Xavier was born with more complex issues than just premature delivery, but the doctors and nurses went the extra mile to care for him through it all. This was a few years before the new facility was built, but Adrianne was awesome in sharing with us some photos from and (and now). You can read their story below in her own words.

My son, Xavier (now 5), was born 4 weeks early due to low amniotic fluid. I had a normal pregnancy and didn't expect anything different despite his late prematurity. Little did my husband and I know that on Friday March 13, 2009 things were about to change dramatically. When Xavier was born (at 4lbs) there were immediate signs of distress...he had difficulty breathing as well showing signs of seizures. He also looked different than typical children. He was born at a hospital close to our home that had wonderful OB/GYN and infant care. But despite their best care we were told they were unable to provide enough support for Xavier in their NICU. We were told on his fourth day of life that he had to be transferred to Johns Hopkins in order to undergo further testing and access to doctors skilled in more complex cases. We were in shock to say the least. We were not expecting any of this and suddenly our lives were turned upside down. Getting to the NICU at Hopkins was a whirlwind of nurses, doctors, and tests. I have to admit I was bitter and just wanted to bring my son home and not have him poked and prodded. We were told that Xavier likely had a genetic syndrome and he was, in fact, experiencing seizures. He also had to learn to breathe and eat on his own. It was noted that he also had a number of congenital anomalies. Xavier spent a total of 32 days in the NICU and in that time my husband and I created relationships with doctors, nurses, and even other families that last until this day. They rallied in our highs and supported us in our lows. Xavier's nurses gloated at the fact that I was able to provide him solely with enough fresh breast milk and at the skill of his dad as he was the only one Xavier would drink from a bottle for. They called us immediately with good test results and sat with us to understand more difficult ones. In that time out dread and fear were able to be calmed by simply talking with the nurses about "normal" things. We joked, talked about the weather, and we brought them food (a fed nurse is a happy nurse lol). When the day came for X to come home our doctor met us in the hallway singing the Rocky anthem as we strolled X's stroller into the NICU. You never want to see your child go through such difficult things but I know our son was in the best hands. 2 years after his birth Xavier was finally diagnosed with a rare genetic syndrome called Schinzel-Giedion syndrome. He's one of approximately 12 kids worldwide. We would have never gotten this diagnosis had it not been for our geneticist and genetic counselor...providers who have been with us since the NICU. We have been with our different specialists through surgeries and hospitalizations. Each year we attend the NICU reunion to see the nurses and other babies who were with us from the beginning. Xavier has even attended daycare and now school with the little girl who was next to him in the NICU. We never expected to have a child with special needs but we are fortunate and forever thankful to the staff at the Johns Hopkins Children's Center NICU.

Thank you so much Adrianne for nominating Johns Hopkins Children's Center and for sharing your story with us and our followers as well - the NICU Smocks have already made their way to Johns Hopkins Children's Center (they were mailed the first week of this month) and we hope they bring many smiles to the facility, but even more so to the families that receive one of them for their little one. Here are a few pictures of the gowns and because my oldest colored the box so pretty, she insisted I share a photo of that as well.

When we have more sewn and ready, we will work on pulling some more NICU nominations and dispersing them to other hospital around the United States and the world. It is such a blessing to send these everywhere we can, but even more so to wrap the littlest miracles in something comfy of their own.

Earlier in the month we asked everyone on our Facebook page to nominate a NICU and/or Hematology/Oncology unit or clinic that was there favorite to receive a special surprise from Gracie's Gowns!

We are choosing two NICUs and two Hematology/Oncology units from those nominated to receive a special box from us. The first NICU was chosen - and it is going to Tripler Army Medical Center's NICU in Honolulu, Hawaii! Jennifer nominated the hospital after her son Colton (who is also a Gracie's Gowns recipient) was born and cared for by the NICU staff. She was awesome enough to include a story of his stay and just how wonderful the staff was - and some sweet photos to share as well!

Here is her precious Colton when he was born and cared for back in August of 2011. She includes the following about the hospital and staff at Tripler Army Medical Center's NICU.

"Our son was in the NICU for 12 days in August 2011. Our pregnancy with my son was very rough. Not many doctors believed he would make it or he wouldn't live long after brith. The NICU was just very amazing with him. They did everything they could to help him and it was so nice to finally have someone believe in him. They felt like family to us when we were there. And they just went above and beyond for my son. The NICU staff was just amazing! My son had an MRI when he was 1 1/2 months old and they let my son back into the NICU to be observed overnight bc they knew I was very uncomfortable with him going to the PICU with a bunch of sick kids. They were very understanding and cared very much for my son! And being a Military Hospital a lot of kids are in there with just one parent and no other family members to help them out during a stressful time in life and they could use a little a cute hospital gown!"

The photo above on the left is Colton in his gown from us back in September of last year (2013) and the photo on the right is him today at 2.5 years old! Look how much he has grown and how precious that smile is!! Way to go Colton - you've come so far and we have no doubt it was because of the fabulous start and care you have received since coming into this world!

So what's the surprise we're sending to Tripler Army Medical Center's NICU?

Well, we are sending them thirty NICU smocks to be distributed to the babies they care for! We know it doesn't remotely even make a dent into the 1,100 babies they serve annually, but at least there will be thirty styling babies this year!

These will be sent out this week to Hawaii and we hope they are received with much love and bring many smiles to the families that receive on of the gowns!

Thank you Jennifer for nominating Triple Army Medical Center's NICU and sharing Colton's NICU story with us and allowing us to share it with all that may read our posting!

Thank you as well to Kim for sewing pretty much every single one of these thirty gowns going to the NICU (after we drew the name - we learned Kim's granddaughter was born at this hospital as well, but fortunately did not need to be admitted to the NICU).

Stay tuned for our second NICU to be drawn once we have the items completed - but also for our Hematology and Oncology units/clinics to be chosen!

We talk about Healing Helpers a lot - why? Because they are just so awesome!!

I am all about practical gifts for children in the hospital - hence we make hospital gowns. They are fun, they can be used and they make sense. Healing Helpers do that as well.

They provide comfort, they are fun and they make sense by providing a child with a best friend that is just as special as they are! They are an awesome teaching tool for parents and care providers alike. They can help start a conversation and help "break the ice" in ways nothing else can. Just like our hospital gowns, they show the individual behind the chart...not just a diagnosis.

So with our move coming up really fast, we've been going through more and more in the crafting areas and the kiddos are more than willing to pass along their "loved, but not essentially for living with" animals over to Healing Helpers to be used in making best friends for other children around the world.

It fills my heart to see my littles so giving and so caring of other children that are just as special and unique as they are, but have more medical concerns then they do.

Then it is up to mommy to finish filling the box with her "loved, but not going to be used anytime soon, I am a craft supply hoarder at heart" supplies to be used in the making of pockets and organs and bands and more!

So we have so felt, remnant pieces of fabric from gowns and other pieces of fabric from personal projects.The fabrics are used for the pouches with zippers and the felt is for all the other amazing surgeries, wrist bands, key chains and anything else Michael and Lani-lee come up with over there!They are literally creative geniuses!

I can't wait to see some of these get used and look forward to sending more lovely items their way in the future - Healing Helpers is a very special business to us and great supporters as well! It is always nice to have a set of friends that share a similar passion and yet go about it in such a different way we can compliment each other and work well together!

You can see all Healing Helpers has to offer and browse their website at:

Our spring raffle ended last week and we rounded out the items given away with several great prizes!All prizes have been mailed out and should be received very shortly if they haven't already arrived - there are a few I still have to deliver in person, but that will be taken care of this week as well.I would like to say thank you so much once again to everyone who helped out with this fundraiser and while we didn't reach our goal in ticket sales, we still broke even with our expenses and have a great time seeing everyone get excited about the items they won!We hope everyone enjoys their new goodies and we look forward to doing our summer charity raffle late July or early August depending on when I can finish getting everything sewn up and completed.

Our twenty-second winner was Brenda Hill - her items were from Scentsy!

The items for this day in the raffle were donated by Christi Smith - a Scentsy consultant that is also the mother of a child we have made a gown for.

This cute bunny is a charity item by Scentsy for March of Dimes - we'd love to be able to get a few more of these to include with our NICU gown donations to hospitals.

And there you have it - the last of our raffle winners!!CONGRATULATIONS to all our winners and once again thank you so much to everyone who helped, donated an item, purchased a ticket and just spread the word about our raffle!

We are entering the last week and some of our spring raffle now!It has been so much fun drawing winners for the prizes given in this raffle and I hope everyone is loving their new goodies. Here are the winners from last year.

Our eighteen winner was Vicki Quick - her items were from Scentsy!

The items for this day in the raffle were sponsored by Karen Day Hill!

CONGRATULATIONS to EVERYONE!!!And thank you to everyone who has helped with this raffle by purchasing a ticket, donating items, sharing our event and inviting your friends as well!We still have some tickets for purchase for the last of our amazing raffle items! There's a deep covered baker from Pampered Chef, Scentsy bundles and more still to be given away!

We decided this was a great idea and that we would continue to do such gowns for the children that gowns were requested for, but unfortunately passed away before their gown was able to be made and sent to them.

The first of the three I have been working on is going to the Livingston Family in memory and honor of their son Eddie who passed away from Neuroblastoma in 2013.

His nickname was "Superman" and his gown was actually requested by a mutual friend of the family and myself. Isn't he such a handsome little man? I bet he is an even more precious angel - flying around with his cape and all...having all kinds of fun like little boys should!

We purchased the superman fabric, but two days after having his fabric Eddie passed away, so the special bear below will be headed to his family in Florida.

The second of the three is going to the Scott family in honor and memory of precious Sofia who passed away in March (on my little man's birthday actually) from complications with Spinal Muscular Atrophy Type I.

Her gown was requested by a friend of the family, who also asked that we still send her gown to them as a keepsake. Once again, we decided to make an angel gown with a bear to be sent to them.

And here is the beautiful princess Sofia.

Her angel bear and gown will be making it's way home this weekend as well. Her gown was completed (in her size), but wasn't able to be sent before we learned she had passed away.

So, we sized it down to fit the teddy bear, below is her angel bear. It didn't quite want to sit up on it's own - hence the kinda of squished look in the photo.

Will be working on getting the third one done and posted - it is such an honor to make this tributes to the families we've received requests for and while we weren't able to provide their child with a gown to wear throughout their journey, at least we now have a way to honor their fight.

To the Livingston and Scott families - we are still praying for each of your every day...and while the loss of a child is beyond all words and the hurt will always still be there in many ways, we pray each day you find a little more peace, a little more comfort and a little more love from those surrounding you in prayer.